Between junior and senior years in high school I came down with Epstein-Barr Virus/Mononucleosis. 6 months of flu-like sick
During that time I paid a little more attention to myself. To make a long story short (too late!), and even though these words weren’t commonly known then, I knew I was autistic and had dyscalculia. This can be a big discussion, that won’t be taken up here, but look it up if you are curious. The result, however, is that I was/am a nerd.
Through my 20s I almost ignored my health, which wasn’t wise. I still drank my carrot juice. I tried to eat consciously, aware of nutrition, without being too obsessive. Those were years to explore religion. I learned meditation before it became competitive stillness. I learned the benefits of fasting, even though I already was aware that I need fewer calories than the average person. I learned yoga as physical meditation, not competitive stretching. All of those helped, but I was experiencing a slow decline.
In late January, 1986, my health took a big dive. One doctor called it a hormonal breakdown. Another called it a blood immune system breakdown. One of the many symptoms was that my red blood cell count was too high, and my white cell count was low. At the same time my lymph glands were painfully working overtime. Doctors told me that it was similar to leukemia, but it wasn’t. When I told this to my mom, she went pale and almost fainted.
For months I felt like the fourth day of a flu. Aching muscles. Fatigue. Stiffness. Over the years there’s been a bit of improvement, but I don’t think I’ve totally recovered from whatever that was. Now I feel every day like the second day of the flu when you are pretty sure you are coming down with something. There are many more details that are part of this story, but I don’t know how interesting they could be, and you have read this far, and there is still more to come.
Hana and I caught whooping cough, even though Hana was vaccinated. The school that Thea was going to had both hippie and right wing anti-vaccers. Whooping cough was horrible. A couple of times I felt panic, sure another breath was not going to come. I would run at a wall, hitting it with my chest, in order to force the breath out.
4 year old Hana was so cool. She would be playing, she would sit up straight, close her eyes, and just wait for the breath to come. Her lips went blue a few times. When the breath came she just kept on playing.
For too many few years I would only go to a doctor when things got uncomfortable. Dr Fleiss, our kid’s pediatrician, recommended a doctor he met at a conference. She was brilliant. She tested my testosterone and found I had the same level as a post menopausal woman. She did three things that have since become popular. She prescribed CoQ-10 and DHEA, which are now available over the counter in drug stores, but I had to drive 40 miles to a compounding pharmacy that would make them. She prescribed testosterone, which is now easily available in many forms. We had to get it from a pharmacy in Arizona. And she had me try to increase my good cholesterol to see if my body would make more hormones. Didn’t work for me, but it works for some. Never did lose that weight.
The testosterone allowed me to complete puberty. I grew an inch, I got a chin, I got an Adam’s apple, a bit more body hair, a bit more muscle. I felt better. She also had me donate blood and platelets, which made me feel much better, but only temporarily.
My red cell count is very high. Just short of hemochromatosis. My platelets are also very high. Donating blood to both The Red Cross and Children's Hospital every other month to get around the 2 month wait period to donate made me feel better more often. Sometimes my numbers were so high they would take double amounts.
The yarn store probably wouldn’t have been possible without all that blood donation and the week or two of feeling better when I was a quart low.
Then I went anemic.
They refused me at the Red Cross. My doctor was very concerned. Eating iron, which we were already doing healthily, didn’t do it. Iron pills constipated me. They were sure there was bleeding somewhere, but they couldn’t see or test for anything. Scopes and cameras up one end and down the other didn’t show anything. MRI and CT scans showed nothing. They had me swallow a very large capsule that had a strobe light and camera that transmitted to a computer that I wore, to look at the entire trip from head to tail.
They found nothing.
I felt normal. They were fretting and were going to try something else, when my red cells popped to normal for about a month, then back to high. Then a couple of years later, after a life of dealing with low blood pressure, my blood pressure went high. More on that below.
Then, came arthritis, maybe more accurate to say I got joint pain. And kidney stones. Not calcium stones, like a normal person, but uric acid stones. This was because my body became very acidic. So acidic that some minerals in otherwise healthy foods began crystalizing in my body, making my joints hurt and producing kidney stones. I took care of this by just not eating those foods. This merely slowed down the process. I only met one doctor who knew about this, the partner of my G P. After an unpleasant procedure to remove a stone, with a more unpleasant recovery, the stone came back. Rather than a major surgery to remove the rather large stone, a urologist and nutritionist found a way for me to dissolve the stone, and keep it from growing again. Unfortunately, I had to pass stones, more like sand most of the time, daily for almost year. Very, very painful.
A story about taking the dissolving stuff on a plane here
During these years there came an acoustic neuroma. Even though it was in the ear, outside the brain case of the skull, it is a growth on the main hearing nerve, so it was technically a brain tumor. A friend got one as well. They just scooped out his inner ear. My doctor used triangulated radiation to kill the tumor. Unfortunately, the third and last treatment made my ear go from a 30% hearing loss to an 80% hearing loss. Most of what I can hear is noise, and a constant hiss. In my weak ear, only hear half of music cones in very dimly, and if I turn up the volume enough to hear talking, everyone sounds like they are teenagers, little character to the voice.
Then there are my retinas. There have been three times they have torn. 40 years waiting for the tear sent me quickly to the shop. I had the relatively new laser treatment where they stapled the retina back where it belongs. But the first time I got that treatment they popped my eye out of the socket to do it. The other two times they only lasered it. Never needed any sutures. None of the surgical scars effect my vision.
Sarah joined me in tearing retinas. But she has had the more unpleasant surgery.
There is a cataract that I can’t see yet.
Then there is the wonderful experience with vitreous detachment, another eye problem. The result are these big floaters in my vision. Fortunately, my brain, most of the time, erases them, and I’m not aware of them. But when I think of them, when I talk about them, when I write about them…
Here they are now!
Like big hairy balloons, floating back and forth.
Lately, it seems my eyesight has improved a bit. I have to take my glasses off to write this. The optometrist confirmed, I can see better, especially in my bad eye. New glasses allow me to thread a needle without a tool for the first time in decades.
Recently, it was discovered that the fourth cranial nerve which provides movement to my left eye is missing. (how careless of me) As a young child, I often would see double. Most children will just stop using the eye and it will go blind. Apparently, I am unique. My knowledgeable eye doctor says that a minority of people exercise the other muscles of the eye to make up for the weakness. Rolling my eyes used to drive my mom and my teachers crazy. They all scolded me. I did it so that I wouldn’t see double. It says a lot about the progress of medicine, or medical education, that it took over 60 years and dozens of doctors before I met one who could diagnose the problem.
I still exercise my eyes when no one is looking.
Deep in the middle of the skull is the pituitary gland. It sits in a pocket of skull, the bottom of which looks like a saddle, sella in Latin. Mine is empty. I don’t have a detectable pituitary. I have only some of the symptoms of Empty Sella Syndrome. My entire endocrine system should be a big mess, but it is only a tolerable mess.
When I was dissolving my big kidney stone they found a decent urinary tract infection. I often have a bad experience with antibiotics, but it seemed reasonable to take it this time. After taking the full course, the infection went away. Then the pain of passing the stone hid the fact that the infection came back with much enthusiasm. They thought I was having a stroke. I was in the stroke ward on the Ides of March, 2012
Was it the infection, or the general anesthetic they had me under, or the antibiotics, but a few unpleasantnesses began. My need for sleep increased, and my sleep changed. My blood pressure started to climb. My bowels changed (that was the antibiotics). And I lost my ability to place memories in time. After a few days, the memory of what I’ve done, feels like it could have been last week, or years ago.
Inflammation
And, my muscles started to get extremely stiff. What ? I hear you, Why don’t you stretch? What? Try yoga! More exercise! You are an amazing diagnostic thinker! Brilliant! Why didn’t anyone think of that? Stretching? Imagine!
After a few experiments, it was established that my muscle stiffness was from an unknown source of inflammation. Thank you.
A nutritionist figured out that I should eat ginger, blueberries, green tea, turmeric, black pepper, cinnamon, cloves, oregano, and coriander. These spices greatly help my muscle stiffness, and inflammation. But I must eat them sometimes four times a day. I eat this spice combination, and it will make the stiffness less, but after years now the inflammation will not go away. I’d like to get rid of the source of inflammation, not merely treat the symptom. I’ve been going into the shop again to see if somebody can come up with something new.
They said, You have apnea. The CPAP machine will stop the apnea, make your sleep normally, and lower your blood pressure.
Been using the machine for 6 years now. I still sleep too much, and it did nothing for the blood pressure.
My Pressure
Now the blood pressure. The CPAP didn’t help, 20 medications didn’t help, more than a couple of them had unpleasant side effects. Finally, someone figured out that my adrenal’s are making too much aldosterone. They were so disappointed that there was no tumor that commonly causes the over production of this hormone. They put me on a couple of medications that had very unpleasant side effects. And it didn't help. “Is there was any food that I could eat to take care of the problem?”, they all said, No, there isn’t. I looked online. The Mayo Clinic, the AHA, NIH, and others, all had studies that said eating magnesium lowers aldosterone. So I’ve only been eating the amount of magnesium they tested on, the aldosterone has come down.
Now they are saying that I never did have high aldosterone. Neither of the doctors will accept that magnesium lowered the hormone.
But the blood pressure is still high. And the doctors always seem disappointed that they don’t find with me the common symptoms of very high blood pressure. It will come down if I lose weight. But now I live in a conundrum. I don’t like how I feel with low blood pressure. So I have to figure out, probably on my own, how to keep my weight down, and keep all of these spices and minerals balanced, so that I will only feel bad with my blood pressure, not feel terrible.